Monday, August 30, 2010

Our life lately...

Hi there! Yes, it's been awhile. I have been pretty much non-stop around here lately. The blending food stuff is going great.... very time consuming, but WELL worth it. I think Tripp has gained close to about a pound since I started. And overall I think his stomach is feeling a lot better.

Oh, I got my VITAMIX!! I called the company and got a letter of medical necessity faxed from Tripp's pediatrician (Thanks, Patrice:) and got a very substantial discount :) Plus free overnight shipping. And, that company has GREAT customer service, by the way. And that's something you get very aware of after spending most of your day/life on the phone with doctors offices, insurance companies, supply companies, pharmacies... you get the point. Anyway, it was refreshing to get some good help. And I'm loving the Vitamix. I can just throw in straight avacodos with some olive oil and a little whipping cream, or blend peanut butter with raisins and bananas:) And then put it in ice trays and defrost what I need when he needs to eat. For breakfast, though, every morning he gets a scrambled egg, some yobaby yogurt, a little 100% fruit juice/puree, some flax seed oil, and a few other special ingredients. He is finally getting the calories and the protein he needs (I think:) and I'm feeling really good about it. NO MORE SUGAR MALT!! ever!!

I also got some Duocal (a water-soluble calorie supplement) and another protein supplement called Pro-Stat 64 (again- Thank you Patrice... she's got one great nutritionist!). So I'm hoping these supplements can help with some of his wound healing as well... but in EB-- you never know. Sometimes those sores just won't heal. Like I said, he still has sores from when he was a few months old that look exactly the same.

His wound cultures came back with pseudomonas and another "water/soil" bug. Dr. Defusco said the name, but it was real long. She didn't act like it was really bad or that she was really surprised, but we both agreed that we should try and get him through at least a round of antibiotics. The problem in the past has been the diarrhea. He would start with MASSIVE diarrhea every 5 minutes... like water. Well this time she started him on Cipro for 10 days. And I'm not sure if it is the new feedings, or the fact that I bought a really expensive probiotic from the local whole health market... but he's doing great so far. His stools are still loose (I know you wanted to know that), but no where near what they have been on antibiotics in the past... so hopefully we can get through a whole round of antibiotics this time!!

I say this with as much love as possible, but Tripp is officially a little rotten brat. Ha. We have definitely created a monster. But, you know it's kind of hard to correct your child when 1.) he can't talk to express himself 2.) he has sores all over his body 3.) he's so darn, stinkin' cute. I've just learned to accept the fact that I am going to have that rotten, bossy, fit-throwing little child that I said I would never have :)

No, really. It's bad. He knows exactly what he wants, when he wants it, where he wants it, and who he wants it with. And he can't talk... but he can tell you exactly what he feels with his hands and his facial expressions. He's now practically "hitting" you out of the way if you get in his "personal space." It's secretly so cute, though... and can you blame him??

But he does have his sweet moments, too... when he's tired:) And he's finally starting to love his Mommy... which took a while. He's signing "more" like a crazy man... especially when he wants us to ride him around in his car. He can ride that car for seriously like hours around the house. Grammy taught him how to roar like a lion:) It's cute... If you say, "Don't scare me with that lion!", he opens his mouth and makes a little noise through his trach. And thinks it's so funny. He pretty much does something new every day... And lately, we've been resorting to buying him "music cards" because he has almost every toy on the shelf at Target and WalMart (And seriously, he has every single toy at CVS and Walgreens... I go there the most:) But you should see him dance to his music cards... he's hilarious. He loves any type of music... whether you're singing to him or it's playing on the radio or TV.

He is such a joy to be around. And you know... I've spent a lot of time this year (secretly) feeling sorry for myself for not being able to leave the house or go out to dinner, or pretty much do anything but go to Target... but the more I think about it--- What is better than getting to spend all day with the best baby in the world? Seriously... I was looking at him sleep last night and thinking that there was no place in the entire world that I would have rather been than right there with him. I'm not the one missing out on things. I'm the lucky one. I'm the Mommy to one of God's angels. What else was I put on this Earth to do? Nothing.

I love you guys. Have a great week :)

He needs Mickey up close and personal.

The cutest butt you'll ever see.

Tripp's cousin Elizabeth. I know- BE-U-TIFUL!!

I didn't think to get the camera out until he was really tired... so this is what I got!

Great vieos... what fun!! I am a preschool teacher who put together a Music In Motion class-fun little songs to sing and act out!! I would love to send a cd of wonderfully talented performers doing catchy, simple songs I know your baby boy would love!! Please email me at Dianalin@aol.com if you would like one as my gift!! Tripp is adorable!

So happy that he is gaining some weight and that his tummy feels better. Love those videos. He really is adorable. Love the way he is always wiggling those toes and God what a smile he has. You really are blessed and so lucky too. Love you guys. Love Leah's Nanap.s. what a cute little tushie!!!!

Tripp is so completely and utterly beautiful - both on the inside and on the outside. These pics and videos are fabulous! I too, love his little wriggly toes and his enthusiasm for music. Way to go Tripp - you make so many people so happy! (P.S. YAY for the feeding success!)